Elkemarthaandmeblog

I sit on the floor.

And I cry.

My heart aches. For you, for me, for us.

I feel frustration flow through every vein in my body. Although those same veins flow with a love so strong, it keeps me from killing you.

Me. Us.

How sad that our time apart is the only thing that keeps us together. How absurd that I crave those moments so badly then miss you so much when you’re gone.

Survival.

Headspace. I crave it.

A moment to hold a thought. To finish a feeling. To decide what happens next.

Everything a battle. A compromise. Hard work. Exhausting. And yet so much fun.

Your little quirks. Your moments of hilarity. Thank God for the light relief. That we can still find it in ourselves to laugh. Smile. See the funny side.

Sometimes laughter and tears fuse into one confusing, contradictory emotional explosion.

Our rollercoaster world.

Every emotion in a day, an hour, a minute. We scream, we shout, we laugh, we cry. We feel frustration with every bone in our body.

But we love.

Boy do we know how to love.

And laugh.

Everything at the extreme end of a feeling.

Feels like forever and yet gone in a flash.

The tightest hugs. So tight you can’t actually breathe. Is this love? Or are you trying to squeeze every last breath from my lungs.

Like the whack on the back; mid-embrace. So hard, that for just a second there is no air at all. No breath.

Claustrophobic.

Terrified.

Of you. Of me. Of what you or I might do. Of what we’re unable to do. Of what we’ll never do. Of what you will never know. Of the life we could have had.

Of being hurt, of hurting you; of not giving you the very best life has to offer. Of leaving you. Of what will happen if I’m not around ….

The bruises. The many bruises. The catalogue, the myriad of bruises. And my burning scalp.

Your bravery. My bravery. The bravery of your sister and the people who don’t need to be brave for you but who choose to be anyway. Who go out on a limb to help make your life a little easier. Brighter. Fuller. Safer.

Your bravery on a horse, on skates, in cold water. Your bravery just waking up in the morning and feeling a million feels and thinking a thousand thoughts and always, constantly worrying about what’s coming next.

Fight or flight?

I’ve reached the deepest depths of despair and yet haven’t scratched the surface.

My love for you is inexplicable. Unconditional. And the only reason I find the strength to cope.

I see you. I hear you. I feel you. I’ll do everything I can to help level out those anxieties. Those huge waves that overwhelm you; that come crashing down and threaten to wash you away. So you can’t feel your feet. Can’t secure yourself to the ground. Can’t be sure of anything or of where you’ll wash up or whether you’ll drown in the process.

My child. My little one. Baby in mind but adult in stature. Strength of an ox; weakness and vulnerability of a newborn lamb.

Smother you with love, support, guidance. Provide you with opportunities within the realms of possibility. Tiny possibilities. Huge steps.

Things are changing. Oh how I wish we’d known sooner. The importance of a name, a word. Label. Because with that name come opportunities, those tiny possibilities that give you more. Help. Money. Medicines that trigger the part of your brain that needs help.

Quality of life.

Life-changing opportunities in one, tiny little pill, no bigger than your finger nail. Who knew? And it’s the kindest thing. For you, for me, for all of us. Because it gives us the best of you. The best of me, the best of all of us.

The best future.

Who dares to think about the future and what that might look like? Not me. Not you. But I must prepare. I must ask the ‘what if’s?’ now. I must make absolutely sure that all the things are in place. All the questions have been asked.

So many questions ……

Hope.

The most important thing of all. For you. For me. For us. For the future. For YOUR future. We must have it. We must keep the faith that the future can be positive, happy, easier.

Time.

To quieten the mind. To process. To understand. We’re buying time for your mind. We’ve lost so much of it, that now, we must do everything we can to grapple it back. We must. And we will make the most of every. single. moment.

Cherish you. Me. Us.

Because at the end of the day, that’s what it’s all about isn’t it? Being together. Cherishing one another. Finding hope in the tiny cracks that show through. And love. And laughter.

When it’s all said and done, that’s what I’ll remember. And the rest won’t matter anymore as we find our place in it all.

And love.

And laugh.

What makes an expert? I suppose we’re always led to believe that the people with the most expertise are the ones who are the most learned about a certain thing; those with the highest qualifications. Years of study and accumulated knowledge must mean they know everything there is to know about their field, right? Well, I’ve been giving this a lot of thought lately and I’ve decided that’s bullshit.

Think about it; when did you learn the most about something you were interested in? Was it at school in the classroom? At college or university? During a training course or evening class? Yeah you probably learned all the basics, soaked up some new information, but how deeply did that actually sink in? You might’ve been able to start putting what you learned into practise or regurgitating your fresh knowledge to others and sound quite impressive, but how meaningful was that really?

I’ll bet that the REAL learning, the significant learning, the bit where you really began to understand what something meant, how important it was and how it related to other things, was when you actually started DOING it; when you put it into practise, at work, at home, or in your personal life. Am I right?

It’s like learning to drive isn’t it? Anyone who’s learned to drive knows that you don’t really start learning until you’ve passed your test and you’re out there on your own, in full control of a vehicle, on a road, with no-one telling you what to do, or slamming on the extra set of brakes when you don’t notice that hazard in the road.

I remember when I was starting out in my career and the company I was working for at the time wanted to push me in the direction of a sales role. I was young and inexperienced at the time but they had the confidence in me to do it. I, on the other hand, was terrified. Firstly, I’d never had any ambitions to be a ‘salesperson’, and secondly every potential client I came across seemed to be much older, more experienced and more articulate than me. I really didn’t want to do it and couldn’t get my head around how I’d be able to convince these people I knew anything they didn’t.

When I expressed these concerns to my line manager, she pointed out to me that no-one in the room of any meeting I attended, knew more about what I was talking about, than me. None of those people had the passion or first-hand experience of my work that I did. The belief. The results. The evidence. And then it dawned on me; I was actually an expert. I may have had little to no experience in their lines of work or industries; but I didn’t need to. All I needed to relay to them, was everything I DID know and had experience in. Yes! Once that penny dropped I became really good at my job because I had confidence. I knew something they didn’t because I’d learned it, but more importantly, I’d lived it, seen it and breathed it for a long time. I understood it inside and out.

Doing something over and over again is what makes you an expert. Through practical, hands-on, lived experience. By literally doing things, all the time, you learn more about them. When things aren’t working, you try new ways. You experiment. You may be inspired to find out more proactively and apply your experiences to that new knowledge, in a perfectly blended cocktail of ‘expertise’.

You see, I thought it might be useful to share a bit about my experience of navigating our way through ‘the system’. By ‘the system’, I mean the professional touchpoints throughout Martha’s life, whom we’ve had to approach for diagnosis’, education, health matters and general guidance and support.

Everyone’s experiences are different of course. They can differ vastly depending on where you live and the services available to you in your area, the individual personnel you come across along the way, or even down to the age and gender of your child. And of course, all our children are so very different too, so there absolutely should be flexibility and inevitable differences in our journeys. Children’s needs are different and parent’s needs are too …

Overall, my personal experience has been disjointed and inconsistent to say the least. There has never been a through-line of support. By this, I mean there’s been no obvious journey. No clear direction. You might expect, that once you have a referral for a diagnosis (or anything needs-related) or even after a diagnosis has been received for example, that there’d be a clear pathway of progression to follow. (i.e. This action would lead to that, at which point you’re passed on to the next appropriate service or professional and so on). And even once everything you need is in place, that there’d be regular monitoring of the child over the course of their life? This is not always so… Our experience has been predominantly parent-led (i.e. instigated by me).

Other parents I’ve spoken with and become friends with, have often been on very different journeys and have very different experiences so I certainly don’t speak on behalf of everyone. However, if there’s one thing I have learned, it’s that it’s often a game of ‘he who shouts loudest’ and sometimes you have to stamp your feet and scream at the top of your voice to be heard. Sometimes repeatedly. “If at first you don’t succeed” and all that …

Along the way, we’ve been turned down for referrals, diagnosis’, placements, opportunities and funding. We’ve been offered inappropriate or unsuitable support. We’ve sometimes been ‘ok’ for a while and then found ourselves in a difficult place again, asking for help, at which point, the cyclical journey begins once more.

Instinctively, I know when something isn’t ‘right’. I know when I’ve reached my own limitations or when I need some help or guidance for Martha. I’ve often accepted what a professional has told me, because I understand that they are ‘best placed’ to make a judgement, in a ‘position of authority’ or simply know something I cannot (expert?), and therefore have often (albeit reluctantly) accepted the refusal, rejection or ill-fitting solution.

There’s a certain amount of naivety that comes with not believing you are an ‘expert’ in something that results in you having to put your trust in others and let them take the lead – like taking your car to the garage to be fixed. How do you know what they’re telling you is true? Do you really need to spend £300? You’re not an expert … so you put your faith in the mechanic to do right by you. Trust.

I’m going to be really honest with you here and perhaps a little controversial (what’s new? I hear you shout!) but I struggle with how ‘the system’ responds to different types of people. Let me explain what I mean. In my case, for example, I feel that I’m a reasonably intelligent (no comments please!), strong (in the most part), determined, hard-working individual with a good job and a supportive partner. I’m relatively articulate and have a decent, clean and tidy house (most of the time!). On the surface of it, my kids have everything they need. However, that DOES NOT mean that I am coping any better than the next person.

In fact, honestly, in the most part, I feel that having all those things only creates additional pressure. In order to maintain them, I have to work REALLY hard. I have to spend A LOT of my spare time working – either around the home or for my job. I have more appointments in my diary, more deadlines to keep. More washing and shopping to do and all in far LESS TIME than someone who doesn’t work, for example. I have become an ‘expert’ in juggling ‘life’ and mostly being successful at it; but I don’t feel this always goes in our favour where getting help for Martha is concerned.

A friend and fellow SEN (Special Educational Needs) parent recently said to me that she jokes to friends and family saying that she has two jobs; one as a physiotherapist and the other as her child’s caseworker (!). You’re not kidding. The practical day to day looking after of a child with demanding additional needs is a full time job alone, the administrative side of that is another (there is oodles of extra paperwork, additional meetings and procedures involved when you have an SEN child, as well as time spent learning on support groups and forums. I even did a Level 2 Qualification in Understanding Autism in my non-existent spare time, to help me understand more about it!) and then try throwing an actual career into the mix too and you could say we actually have three jobs!

I certainly don’t wish to be a martyr about it; it’s the lifestyle I choose for myself. To some degree, it’s also for my mental health – ‘tidy house, tidy mind’ and all that. (I don’t function very well in a messy environment!) I also need to work for more than just the income it provides. It’s a part of who I am. I need some significance beyond being a mum, and I recognise that about myself. (a whole other blog post perhaps ;0) )

There are two sides to this coin. In some ways I feel the system is far more set up for families in need. Families in worse off situations than ours. That in some circumstances it goes against you when a social worker walks into your house and sees that you appear to have mostly ‘got it together’, you have everything you need and that, in that moment, your child appears calm and happy. What’s the problem?

On the other hand, I do worry about those people who are trying to navigate the system and who are not well-educated, who are not very articulate, who have low self-esteem and lack confidence; who have no support network, no job, no money, no partner, or are in abusive relationships etc. How the hell do those people navigate the system and cope? Perhaps they don’t.

We both have wonderful families and a great support network of friends but what we don’t have is any physical family support on our doorstep. We don’t have family we spend time with on a regular basis or babysitters on tap; Mum’s shoulder to cry on (phone calls are just not the same) or just somewhere to go when you can’t be alone with it anymore. Who do you go to when you’re on the floor?

I have recently emerged from a very dark (and luckily quite short-lived) period of time. A few weeks ago, Martha went through a very difficult period in regards her behaviour. When this happens, (and it often comes in waves) Martha’s behaviour becomes progressively more erratic and physical. She becomes aggressive and violent and any transitions become incredibly challenging

To paint a picture, I had a week-long adverse reaction to my first Covid vaccination which included flu-like symptoms, aches, pains, headaches, lethargy, nausea, diarrhoea, foggy-headedness. I (typically) got my period the day after and a friendly, cheeky little accompaniment of hemorrhoids for fun (yeah – I’m bringing sexy back!).

I’d arranged my jab for a Friday morning before a weekend when the girls were with their Dad as a ‘precautionary’ measure, not really expecting to feel all that bad. Ha haaaaaaaaaa! How wrong could I be? And thank the lucky stars I did!

Martha had already had a tricky week with an ongoing irritating skin rash, which made getting dressed even more challenging than usual. She’s already very sensory when it comes to putting on clothes and doesn’t like it at the best of times (she’s happiest hanging out naked as I’ve previously referenced!) but this rash meant that clothes had become her arch enemy! To add to this we were also going through a very difficult period with our freshly baked teen (which I’ve promised not to get into in my blogs!).

When we arrived to collect Martha from her Dad’s on Sunday afternoon, Martha seemed relaxed. She was pleased to see us and happy to be going home, however, after a few minutes in the van (Karl was driving), all hell broke loose. Martha decided she was absolutely not ready to go home to bed. She removed her seatbelt and launched forward attacking Elke (freshly baked teen) and pulling her hair. She shouted and swore, causing dangerous disruption to the journey. I was still feeling very unwell and was aching from head to foot but had to physically restrain Martha alone in the back until Karl could get us to a safe place.

Long story short, a journey which should’ve taken us 10 minutes, took over two hours with a huge crisis meltdown from Martha and numerous physical restraints. If I’d felt ill before, I certainly did now. The muscles throughout my body had been tested to the limit and I ached more than ever.

The week that followed was hellish with the same behaviours at the beginning and ends of each day, each transition to school resulting in sometimes 2 hrs of meltdowns, attacks, physical restraint or dangerous behaviours. I had my hair pulled, boots thrown at my head, doors slammed on my fingers. You name it!

Meanwhile my health deteriorated. I was having anxiety attacks resulting in little or no sleep. I continued to experience ill side effects of the vaccine and ended up in crisis talks with my GP over whether I needed anxiety and anti-depressant medication. I also made a crisis call to my CAHMS keyworker to let her know that as a family, we were at breaking point and I wasn’t sure if I could cope much longer.

I’d hit another of those ‘crisis’ points that we do every so often (about once or twice a year maybe?) and it really worried me. What if I became too ill to look after Martha? What if I literally wasn’t strong enough to keep her from harming herself, her sister or even me? I know when she was having a full meltdown in the van that I wasn’t strong enough on my own to keep her from launching at Elke, or getting herself out of the door and into the road. These moments are a frightening reminder of how tough things can become and what the future may bring if something doesn’t change. Things got so bad that I actually ended up with Shingles!!! (often associated with both a weakened immune system and stress).

Luckily we’re already on the journey with the right professionals who can hopefully work with us to address these issues going forward. Martha was recently accepted by our local CAMHS team (The Child & Adolescent Mental Health Services), and they’re working with us to explore and understand more about some of Martha’s specific behaviours and help get to the bottom of any undiagnosed disorders or potential treatments and strategies that may give Martha a better quality of life. To make it absolutely clear, I am massively grateful for this help and support and I hope it gets us a little closer to where we need to be. We’re working with a team of specialists whose expertise in their areas of work can absolutely know and do things we cannot. However, I still regularly remind myself that it’s my job to paint a clear picture of who Martha is for them, to relay her individual challenges and needs, alongside our needs as a family. It is also my job to push at every open door (and sometimes the firmly closed ones!); to challenge things and speak up when something isn’t good enough or doesn’t feel right.

I think overall there has been a lack of joined-up thinking up to this point. The support has generally been inconsistent and never really communicated to me clearly. It’s been a series of different professionals, services and individuals coming in and out of our lives at different points and I’ve never been clear on how (if) that all links together and who, if anyone, is looking at the bigger picture stuff. Until recently, with the involvement of CAHMS, there has been no-one looking in detail at all areas of our life and pushing for answers.

Of course, there will always be a part of us that is naive. We don’t have enough varied experiences for example. We don’t know what support networks are available to us, or even that they exist. We have to be open to suggestion and we can always learn something new. I’m not insinuating that well-trained professionals have nothing to offer, of course I’m not. Far from it and I wouldn’t be here if it weren’t for a number of highly trained, supportive, wonderful professionals who have played a part in Martha’s life. Skilled doctors, teachers, therapists, psychologists and some wonderfully experienced individuals… the list goes on. They are, of course, Experts.

But what they are not, is the expert of my child. They often haven’t met my child before and don’t know everything there is to know about her. That can only be learned by listening to those who know her well and by spending time with her, observing and communicating. And they will never know everything because they are not there in the middle of the night when Martha gets up for the third time, or first thing in the morning when she refuses to get dressed and gets herself in such a tizzy about it that she escalates into full crisis-mode, hurting herself and others, unable to process the enormity of the task ahead. When she throws the third full cup of juice across the room or when she doesn’t wipe her bottom properly and ends up with an infection. To witness that look in her eyes as she’s about to do something she’s unable to control. Because I’ve seen it many times before I’ve begun to recognise what that look means – if I’m lucky enough to spot it in time (!). To see the realisation of what she’s done sink in and watch remorse take over. I’ve learned more from Martha in the last 10 years than I could possibly scribe but I’m still learning too!

As parents, we may not know everything there is to know about our child’s particular need or diagnosis but we are experienced in dealing with our children day in, day out. So, I’ll tell you who the expert is when it comes to my child. It is me. I am the expert. I can tell you everything there is to know about her. I can tell you exactly how she behaves when a certain thing happens. I can tell you that what you’re about to try is not going to work because I’ve tried it 100 times before. I can tell you that you’re wrong when you think this particular action is behavioural and I can explain to you in finite detail why this particular support would make a world of difference to our lives.

I am the expert of my child. Her number one supporter and advocate. Which means I will fight to the bitter end if necessary, to get her what she needs and help make her life a happy one. And my advice? You are the experts of yours too! Don’t ever let anyone tell you or make you feel otherwise.

We all need a little time out from time to time, right?

We become overwhelmed with life and sometimes there is no time or head space to think about our own thoughts and feelings or to prioritise them.

I was talking to my colleagues only this week about a term they had come across via a friend entitled ‘the mental load’:

‘The mental load basically refers to the invisible labour involved in managing a household and family, which typically falls on women’s shoulders . Also sometimes referred to as ‘worry work’ or ‘cognitive labour’, the mental load is about not the physical tasks but rather the overseeing of those tasks. It’s being the one in charge of having the never-ending list of to-do items constantly running in your head, remembering what needs to get done, and when, delegating all the tasks to respective family members and making sure they actually get done.’

Kelly Gonsalves, mindbodygreen.com

I’m sure I speak for many women when I say that I definitely carry the mental load in my household. And I don’t intend for this to be a bold, feminist statement or sexist in any way, as I’m sure there are many cases in which the opposite is true, but generally speaking females, particularly mothers, tend to be in a position where they have the overview of all aspects of family life.

Having been divorced and a single parent, for me this has been unavoidable and perhaps more intense at times but I think it’s the same in most households; that one person tends to carry ‘the mental load’ whether married, co-habiting, bringing up a family or maybe even running a business. (My business partner, Chris, actually brought this up in relation to a task I’d agreed to take on as he was concerned it was adding to my already weighty ‘mental load’. Bless him. I’m very lucky to work with someone who genuinely considers my needs).

Let’s be honest, in many cases, I’m sure we carry that load because we (maybe by default) choose to. We see ourselves as best placed and most capable of doing it and actually making things happen. Society often refers to the male inability to multi-task and by nature, women are far more geared up to do that. Our ingrained maternal instincts mean that we naturally put our children and families first. We think about everything we need to do for them and we prioritise that. Once we get (if ever) to the end of that ‘to do’ list, then we might consider doing something for ourselves.

With the kids around, I rarely find I can follow a train of thought, let alone an action. I make a coffee, then two hours later I find said coffee on the windowsill, freezing cold, right where I left it after dashing off to untie a knot, wipe a bottom or unglue a child from the sofa. Martha asks question after question after question all day long; many of them the exact same question on repeat but always requiring an answer. She’s constantly looking for reassurance as to what’s happening next and when she’ll be able to do the one single activity she’s been looking forward to all day or eat more food (these are often one and the same thing!). This means that getting to the end of a thought I was having or a job I was in the middle of doing, is often an unachievable feat.

At Martha’s school, when a child is feeling overwhelmed or over-stimulated (this might be because of noise sensitivities, difficulty in making choices, emotional overload or simply general frustration), they are supported over a period of time to recognise this and can hold up a ‘Time out’ card which allows them to leave the room and enter a quiet space for 5 minutes or so. A self-management technique which enables the children to recognise their own limits and take responsibility for themselves in that moment, taking time out to calm down and regulate their sensory needs; thus preventing further stress, a meltdown or disruption to the classroom. I’ve often thought how we should all embrace this idea in our own, adult lives. We could all do with a ‘Time-Out’ card for when the ‘mental load’ becomes a bit too much and we just need to escape it all for a few minutes (or a few weeks in Greece but this, I know, is fantasy!).

I find myself in a position this week, with my children spending a week of the summer holidays with their dad, and my partner Karl working away for a month, where I am completely alone. A whole week of quiet. No-one else’s needs to consider but my own. Why is it then that so far I have spent 3 of those days working (I’d planned to give myself some proper time off before fully getting back to the daily grind in September), half a day booking events and doing accounts for Karl’s business, half a day tidying the girls bedrooms, organising school uniforms and shopping for things they’re going to need for school and a whole host of other mundane tasks and household chores that (not urgently, I might add) ‘needed’ to be carried out?

In fairness, I have also integrated lots of nice things for me among all of that. I’ve taken time to read and finish a good book (Big Magic by Elizabeth Gilbert which has spurred me on to do more of the stuff I love like writing this blog! I recommend it to anyone looking to embrace a more creative life. Thanks for the accidental surprise Katy May!).

I also took myself to M&S and treated myself to a week’s worth of delicious, easy meals for one and a couple of pre-mix Pina Coladas (because for anyone who hasn’t been introduced to the delights of pre-mix M&S Pina – you don’t know what you’re missing!). I’ve made plans to see lots of friends who I don’t often get to catch up with, and I’ve even squeezed in a couple of good films from the comfort of my own bed. Alone. Completely alone. Did I tell you I was alone and had the whole bed to myself? Oh the joys of having a whole bed to myself and the rarely experienced, but deep love I have for ‘starfish sleeping’ – let’s not underestimate the small things. 😊

So this is a reminder to you all to take some time out. A break from the ‘mental load’. Carve out time for the things you love. It’s so important to look after yourself, make time for self-care, give yourself a break and press the reset button. Go and have a really nice coffee alone somewhere with a good book. Or spend time with friends who fuel your fire. Buy the trashy mag. Watch an old film. Devour a box of your favourite chocolates or go for a wild swim!

For those of you who don’t know, I love a wild swim (although I’ll be honest and say I’m not an all-year-rounder. A fair-weather swimmer if you like.) Sometimes the thought of dragging myself out of a warm bed because I’m child-free and can go for a wild swim seems like complete madness; but I never, ever regret that choice. The feeling of exhilaration when I first enter the water is child-like. We don’t feel those things too often as adults and it’s a friendly reminder of what it was once like to be free and without the weight of adult responsibility bearing heavy around your neck.

The closeness I feel with nature while I swim, which I’m aware sounds a bit ‘out there’ is real. The weightlessness of my body transcends to my thoughts, feelings and stresses relating to daily life and momentarily, they disappear. When I emerge, I feel new again, comforted. I feel a sense of accomplishment, of deep satisfaction. I dry off, pour a coffee and start anew. If you haven’t tried it, I recommend you do. And if Wild Swimming isn’t perhaps for you, find YOUR thing. Whatever it is that makes YOU feel that way and do it as often as you can!

I’m now making time to do some writing before going out for a long lunch with a friend. I haven’t yet managed to fit in a wild swim this week which is disappointing but the weather’s been flipping miserable so it hasn’t been either possible or appealing thus far but there’s always tomorrow …… I have one full day left and anything is possible!

I want to talk about a touchy subject but one that seems to keep cropping up in all sorts of varied contexts lately; comparison.

We’ve been brought up in a society that seems to constantly compete and compare. Firstly, I believe our education system has a lot to answer for with it’s unrivalled obsession with academia. Once you step foot into secondary school, divisions are immediately created by the ‘streaming’ process where young people are taught in ‘sets’ according to their ability. I’m not saying this is wrong necessarily, I understand this system has it’s benefits and that there’s a need to do this to some degree to inform teaching and progress rates, however, such a system makes it so easy to forget all the other important aspects of an individual, the things, other than academia, that make them clever and capable and interesting.

It also seems to diminish the significance of alternative learning styles as well as the benefits of learning from others. The focus has always been academic ability and I’ve always been a big believer that this is just one small part of what can actually make a person ‘clever’. So many other qualities make a person interesting or successful that don’t display themselves as academic that aren’t always valued or nurtured in the same way by the education system as it stands: physical skills, inter-personal qualities, a great sense of humour, the ability to connect, a great eye for art, the ability to craft and to make, the ability to see things in a different way to others, a caring and helpful nature; the list goes on…..

At school, even when the subject matter was not academic, but physical, for example, the focus on competing and the importance of winning always seemed to overshadow the simple enjoyment of physical activity. I’m sure this is one of the reasons I don’t really enjoy it. I was never very good at it and was never going to win anything so what was the point?

I recall sports days at primary school where the best I could hope for was third place in the egg and spoon race. That’s an actual truth right there. I remember it so distinctly because I’m certain it was the only sports day placement I ever received. I reckon I’ve still even got the certificate somewhere, tucked in the back of my Record of Achievement folder, such was it’s significance.

And do you remember the horror of your fellow classmates being allowed to pick out their own teams for sports at school? Do they still do that? One by one, the best, most able sports people were selected (closely followed, if not preceded, by the most popular or threatening kids in school) until only the unpopular, unfit kids remained. How dreadful. It makes the hairs on my arms stand on end at the thought of it.

I appreciate there is absolutely a place for competitive sport and that it should be encouraged and nurtured in the right time and place, don’t misunderstand me (my sporty little sister is a netball coach and would kill me for saying otherwise!) but imagine a system that instead of focusing it’s energies all on the people who are already good at, and interested in sport, looked more closely towards the children that aren’t. Those who aren’t good at it, who don’t at first appear interested. Imagine if you could find a way to help them enjoy exercise, to help them identify a type of physical activity that gave them pleasure, that they could engage with, just for fun! Not to mention the obvious health benefits (mental as well as physical). Imagine the increased self-esteem in realising that you don’t actually have to win or be good at it – just enjoy it!

Unfortunately, I’d say that in my personal experience, instead of really learning to appreciate the life-long health benefits of keeping fit and finding fun in physical activity, the physically capable were encouraged to become athletes and sports people and the fat kids were left to get fatter.

There are so many different aspects of intelligence. Although I was reasonably academic at school, choosing to focus my efforts on my passion – theatre, was often considered ‘a waste of time’ by teachers and peers. When it came to choosing options in Year 9, teachers and careers advisors would frequently question how useful ‘theatre studies and drama’ would be for my future. They’d say that it ‘wasn’t really academic enough’ and ask ‘how it could possibly lead to a career?’. Luckily for me, my parents never questioned it too much and always supported my choices.

I always had a passion for theatre from as early as I can remember. I loved performing and I loved watching it. The thrill I would get from seeing all kinds of live performance and theatre was unlike anything else I’d experienced. The way it could immerse me, swallow me up with whatever emotions it conjured up; true escapism from real life. As I got older and was lucky enough to experience theatre in an education setting, I could see first-hand it’s ability to educate, to influence opinion, to challenge perception and emotionally engage it’s audience, encouraging them to question things they thought they already knew and challenge them to behave differently. I saw it’s power and I knew I needed to be a part of that.

These days, I can happily stick a firm and smug middle finger up to those who questioned my passion and judgement because I have, so far, made a very good career from my love for theatre and have put my Theatre Studies A level and University degree to very good use, thank you very much. Creating and delivering theatre that does exactly as i describe above is what I now do for a living. So, from personal experience I believe that following your passion and doing what you enjoy will always take you far. Even if you don’t earn enough to annually holiday in the Seychelles or live in a small mansion, it will mean you are almost always happy in your work. And what can be more important than that? (#mentalhealth)

Moving on from the education system. There’s a lot of talk about ‘Comparison Syndrome’ lately with a particular focus on social media and our modern-day ability to gain a little ‘peak’ of insight into each other’s daily lives.

I. LOVE. INSTAGRAM. There, I said it! I do not, and will not apologise for my presence on it. It’s one of my favourite hobbies and a healthy way of documenting our daily life and sharing images that I feel are beautiful or meaningful (to me). It’s a great photo-documentary I’m always able to look back on. I can remind myself of what was going on at any given time of our lives – especially the good times, the positive memories.

I’ll be honest, I don’t always want to post the shit stuff. I’m happy to be open about the more challenging parts of my life and share them with friends or anyone who directly asks, and I regularly refer to those, more ‘trying’ moments in my stories (which disappear after 24 hrs) or in my blog. But I don’t necessarily want to look back on videos of Martha having a meltdown or me looking shocking without my make-up or feeling frumpy and overweight. I want to feel good about myself. I want to feel good about my life and look back on the happy, positive moments, not dwell on the less happy ones. In doing so, I’m not trying to make anyone else feel worse about themselves. It’s a snippet of my life and anyone using social media (at all) should always do so with applied logic and social intelligence. It’s not for airing your dirty linen and it’s certainly not a completely true reflection of reality. It’s a small part of that. We all have the choice to use social media in the way we choose to, in the same way we have the choice whether we want to use it at all (!). The trick is, not to compare your own life to that ‘carefully selected representation’ of others. It’s always only perception anyway. We’re all different and choose to live our lives differently.

One of the comparisons I find particularly infuriating is relating to autism. I completely get why people do it; we’re all looking for common ground and it’s human instinct to want to make someone feel better, by showing comradery and letting you know you’re not alone in something, I get that, but I can’t tell you how annoying it is when you tell someone about an issue you’re having with your autistic child and they respond with something along the lines of ‘Yeah, but they (kids) ALL do that don’t they?’ or ‘That happens to the best of us’ or ‘We’ve all been there, haven’t we?’. Actually no. Your experience of that particular thing is NOT the same as mine. Or your one experience might be just that; one experience whereas mine might happen EVERY. SINGLE. DAY. I do understand why you feel the need to compare your neurotypical child with my, neurodiverse one but please try hard not to. In the same way I will try not to compare my experiences with yours – even between autistic children no two experiences or children are ever the same.

That’s actually one of the most difficult and lonely things about parenting Martha. Even though I subscribe to a number of ASC (Autism Spectrum Condition) support groups and forums, and despite the fact she attends a special school for others with the same or similar diagnosis, it’s hard to find others who can completely understand or who have the same life experiences as you do. There are similarities of course and it’s comforting when you find those areas of common ground but it’s rarely the same.

Martha, for example, can be very physically aggressive. She doesn’t care whether your child has autism or not, whether they are smaller than her, or if they suffer with anxiety in the same way she does; she still, for whatever reason, may attack and hurt them. No-one likes it when their child is hurt (of course they don’t!) and in my experience, people (on the whole), are not very understanding or forgiving of children (or their parents) who hurt others , even if you try explaining to them that your child has autism and that they’re unable to express their emotions another way and don’t really understand what they’re doing. Mostly, people just don’t get it. And why should they? I don’t get it either. It’s out of the realms of what we know and have come to expect of ‘normal’ social interaction. Hurting one another is not acceptable and we’ll do anything to protect and defend our own children, won’t we?

Anyway, I’ve garbled on rather a long time and find myself going off-topic and I’m still not really sure I’ve said what I wanted to (!).

I suppose, overall, it’s just to encourage you not to compare yourself to others. It doesn’t matter a jot what someone else is doing with their life and how that differs to yours. Do what you love and to hell with what anyone else does or thinks. I definitely believe you can take enjoyment in seeing what others are up to; I bloody love a good old scroll through Instagram seeing how people spend their time and money or how they decorate their homes. I take so much inspiration from others and am always finding new makers and products I like by following like-minded people and accounts on ‘the gram’ (which does no good for my bank balance!). But I do try not to measure those people and what they are doing, against my own life. We’re different people, with different tastes and preferences, in different circumstances and whose paths have led them to different places in their lives. How can you compare that?

They say that comparison is the thief of joy and I say that’s so true.

‘A flower does not think about competing with the flower next to it, it just blooms.’

Zenkei Shibayama